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Website Policies

Privacy Policy, Links Policy, Terms of Use & DISCLAIMER


The Privacy Policy, Terms of Use statements, & Disclaimer apply to all aspects of this website operated by, or on behalf of the Lymphangiomatosis & Gorham’s Disease Alliance, Inc. (hereinafter referred to as the LGDA).

Privacy Policy

The LGDA respects the privacy of visitors to its website and recognizes its responsibility to keep confidential any personal information which visitors may provide.

Information Collection and Use

The nature of the website visitor information we collect is generally of two types: (1) website traffic, and (2) personal information.

Examples of website traffic data are: the tally of visitors to the website, pages viewed, and duration of visit. This data is used to assist us in the ongoing management of the website and/or improving visitor services.

From time-to-time we collect personal information provided by visitors. Examples of this include, but are not limited to, requests to be added to our mailing lists, registering to participate in a webinar, enrolling as a volunteer or supporter, participation in a survey, or possibly through donation. We collect this information only when a visitor provides it – and it may include a visitor’s name, street address, city, state, zip, phone number, and email address. Visitor information may be used for periodic mailings which convey current news about the foundation.

The LGDA does not sell, trade, or rent visitor personal information. We will keep confidential all personal information, including benefactor information, except that which the LGDA is legally required to disclose. If at anytime a visitor wishes to decline receiving our regular newsletters, the visitor may send an email (including name and contact information) to:


Or, send such a similar request to us using our Contact Us form or unsubscribe at the bottom of the newsletter.

By visiting the LGDA website, or providing personal information, the visitor consents to the collection and use of information as described in these relevant policies.

If a visitor who has previously provided personal information to the LGDA via this website wishes to review, change, modify, update, or delete such data, please submit your changes or requests to:

7901 4th St. N
STE 5761
St. Petersburg, FL 33702 or use our Contact Us form.

Links Policy

In furtherance of its information-access aims, the LGDA website contains select links to other websites. The links are provided only as a compliment of our intent to provide information about the many varied and sundry aspects a patient and/or family must try to cope with in the course of the very rare diseases of lymphangiomatosis & Gorham’s disease. The links may be of interest to the patient community. We caution our visitors who may use the links that we are not, nor can we be, responsible for the material, the policies, or privacy practices at other sites to which we have provided links. Providing a link constitutes neither a validation of the material offered, nor an endorsement of that material. The information displayed by the LGDA website, or the information displayed by the sites we provide a link for are no substitute for qualified, professional medical advice, consultation or care. We urge all visitors to discuss any information you may acquire from the LGDA website (or from any website we provide a link to) and all questions you may have about your medical condition with a qualified medical professional.

We further alert visitors to the LGDA website that they should read the privacy statements of every website which they may link to. The foregoing Privacy Policy applies solely to the information collected on our website.

The LGDA may allow its website address to be posted as a link from select websites. These inter-links are permitted as long as they are in furtherance of the informational and educational aims of the LGDA, and serve to increase patient/family, public, and medical community awareness and understanding of the very rare diseases of Complex Lymphatic Anomalies.

Terms of Use

©2022 Lymphangiomatosis & Gorham’s Disease Alliance, Inc. All rights reserved. Unauthorized use prohibited.

The LGDA materials are protected by U.S. and international copyright laws and may not be reproduced for commercial use. The LGDA welcomes visitors to use our website to obtain information which they may find useful. These Terms of Use apply to all visitors to the LGDA website, incorporating all revisions as they are posted. In accessing, browsing, searching, or posting any comments, visitors agree to be governed by these Terms of Use. Users shall also be governed by the posted rules of communication in certain areas such as the code of conduct in the Facebook groups, and other posted guidelines prohibiting merchandising. The LGDA reserves the absolute right to remove any information, at anytime, from its website, which it deems, in its sole opinion, to be inappropriate.

We stress the importance to all visitors that they take note of the DISCLAIMER below with regard to any and all: information, services, products, postings, content of Facebook groups, and links provided.


Neither the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) nor any staff member is qualified or intended to serve as a source of medical advice. The information contained in the LGDA website is provided with the understanding that the LGDA is not engaged in rendering medical advice or recommendation. The material provided is solely intended for educational and informational purposes, and as a benefit and service in furtherance of the LGDA’s mission. This information does not replace necessary consultations with a qualified health care professional.

The information contained in the LGDA website is neither presented as, nor is it intended to be, a substitute for medical inquiry, advice, consultation, or treatment. Visitors are cautioned that (1) they should not rely on anything on this website which is provided by the LGDA, or anything which may be posted on our website or discussion forum by a visitor as a measure or step in the course of treatment for any medical condition, whatsoever. The LGDA urges visitors to consult with their medical doctor or other qualified medical professionals promptly if they have, or suspect they have, a medical problem.

The LGDA and its respective agents and representatives, both individually and collectively, make no representations with respect to the contents hereof, and specifically disclaim any other warranties, including but not limited to implied or express warranties of merchantability or fitness for any particular usage, application or process.

All material contained or referenced on this website, including health- or medical-related materials, is for informational purposes only. Always seek the advice of a qualified health provider with any questions you may have regarding a medical condition.

Changes and Updates

The policies of the LGDA are subject to change without prior notice to visitors. Changes are effective immediately and will be posted in the appropriate place on the website.

How to Contact Us

Visitors may send questions about policies and website usage to:

7901 4th St. N
STE 5761
St. Petersburg, FL 33702 or via our contact us form